Living with CHD: quality of life (QOL) in early adult life.

Aims The aim of this study was to assess the quality of life, psychiatric morbidity, and the psychosocial adjustment of adolescents and young adults with CHD, and determine which variables play a role in buffering stress and promoting resilience and which ones have a detrimental effect; and to investigate the situation on school performance and failures, social and family support, physical limitations, and body image of these patients. Methods The study enrolled 137 CHD patients (79 male), with age ranging from 12 to 26 years old (M=17.603.450 years). The patients were interviewed regarding social support, family educational style, self-image, demographic information, and physical limitations. They responded to questions in a standardised psychiatric interview (SADS-L) and completed self-reported questionnaires for the assessment of quality of life (WHOQOL-BREF) and psychosocial adjustment (YSR/ASR). Results We found a 19.7% lifetime prevalence of psychopathology in our patients (27.6% in female and 13.9% in male). Of them, 48% had retentions in school (M=1.61 year +/- 0.82). The perception of quality of life in CHD patients is better compared with the Portuguese population in the social relationships and environmental dimensions. However, it is worse in complex forms of CHD than in moderate-to-mild ones, in cyanotic versus acyanotic patients, in moderate-to-severe versus mild residual lesions, in patients submitted versus those not submitted to surgery, in patients with versus without physical limitations, and patients who have need for medication versus those who do not. Social support is very important in improving quality of life of patients in all dimensions as well as academic performance. Conclusions Female patients and patients with poor academic performance and poor social support have worse psychosocial adjustment and perception of quality of life.